Our doctor told us that my daughter will need to wear a medical bracelet/necklace stating "TAKING BLEOMYCIN - NO SUPPLEMENTAL OXYGEN". We were told this at the start of her CHEMO. So when she finished her chemo we asked the doctor when she should stop wearing the bracelet and he said "never". I was wondering if anyone else was given this information
Hi Mastern, did you get a second opinion about this? I am really not quite sure about wearing a bracelet for life, I wish I had better insight for you. And, I am hoping that one of our wonderful supporters here will give you some information.
They have not mentioned anything like that to me.... I just know that there is a "maximum dose in a lifetime" for that medication. Interested to hear what others know about this subject. Thanks for posting.
Never mentioned to me. I have found out since, though, that a side effect can be pulmonary fibrosis (which I have, but it's not a huge deal), and there is some research into oxygen toxicity after having bleomycin. For sure, any future anaesthetist should be made aware she has had it. You've started me thinking, and I may ask my doctor when I have my next annual check.
I still have my bracelet I leave it in my wallet just to let someone know that i went thru a transplant. Cause you never know.
I have never heard of this and was never told about it from my Dr. I did get a bad lung infection from BLEO at my very last Chemo that lasted for about 3 weeks.
I am a similar age and also went through six cycles and HAVE to wear my medic alert bracelet for the rest of my life. No oxygen levels above 20% are safe including the masks that drop down on planes and in some lung function tests. The test shows if bleomycin has adversely affected your lungs as x rays don't always show up the inflammation. I had to discontinue bleomycin for a large part of my treatment because my lung test showed up less than half what it should. I will never have full lung function again.
I wondered about the aeroplane oxygen masks. I am an amateur hobby pilot, something I learned as a reward for surviving Hodgkins. I've never flown above 5000' in a light aircraft, but I fly at least twice yearly as a civil passenger. Knowing more about the atmosphere and how planes work than a non-pilot, I have always told my family that if the mask drops, grab it, put it over your mouth, fasten the elastic around your head, then, and only then, start thinking about whether or not you need it. If the plane depressurises suddenly at 35,000', you will be unconscious within moments if you do not. Better to have everyone else laughing at you if it's a fault than pass out and not come round again, or survive but with brain damage.
In the unlikely event it happens, I think I will still do the same, because I know that my lungs MAY be damaged more than they are already if I do, but all of me WILL be damaged if I don't, including what few bits still work perfectly. I will, of course, after taking over because both pilots didn't put their masks on, and landing flawlessly, consult the first doctor I see.
A word of reassurance - oxygen masks for passengers are usually supplied by a chemical process, rather than a tank. They cost a great deal of money, and if one goes off, they all go off. So the aircraft would be grounded until they have all been changed. For this economic reason, they are highly unlikely to deploy for no good reason. The pilots' emergency supply is from a tank.
I asked the NP at my oncologists office about this when she was explaining the whole chemo process to me. She was clueless - had never heard of it....These days you really have to take care of your own health and be aware, do your research, don't assume your doctor knows everything.
I'll be asking other medical professionals about this and push till I get a clear answer on what impact this has on me. My lungs are good now, thankfully, as I head into my 2nd treatment in cycle 1 of 2.
Mary
I saw my oncologist this morning for my 9th (clear) annual check-up. He said that the toxic effect of bleomycin improves over time, and I now have no real need to be alarmed. It would of course be a good start to a conversation with an anaesthetist.. So I can breathe easy. Well, no, I can't, but you know what I mean.
yes we too were told this.
My husband has a medical alert neck lace and wallet card.
still pays to explain as they all do not understand that the tag means (experienced this)
Yes, I just was handed a card to carry in my wallet the day I started treatment with ABVD and was told I need to keep it for life. Was also encouraged to get a medical bracelet.
What my onc didn't tell me was the possibility of lung toxicity in general from bleomycin, which I am now dealing with.
Come to think of it, I got a card, but it is to do with "Graft vs Host Disease" if I need a transfusion. It's very worn, and next to illegible. Darn it - should have asked on Wednesday!